Tag Archives: disability

Roe v. Wade – some thoughts

I grew up in a pretty conservative Christian denomination/cult. It doesn’t really matter which one – the point is they were Conservative. As in, they considered themselves downright progressive because they allowed women to wear pants. They unironically thought that having an “open mind” was a bad thing. Because it “made your brain fall out.” And they were absolutely dead against Roe v. Wade. Abortion was murder and there was no convincing them otherwise. 

They weren’t the type to protest and scream at people outside of abortion clinics. They WERE the type to have an annual abortion protest along a highway. Of course, my family went, which meant I was there as a young child. I was completely steeped in it. 

My view has completely changed as an adult. I really am progressive now; left enough that Democrats annoy me with how conservative they are. Even so, I remember clearly what it was like. What their thought processes were. And, sadly, the things I used to say when I was parroting what I had been told. 

They do focus really hard on the idea that abortion is murder. Many of them truly do believe it. A fetus is a person and that’s just all there is to it. The fact that it relegates anyone with a uterus into little more than an ambulatory incubator was not given any consideration. Of course, I say “anyone with a uterus,” but they certainly didn’t. I had no idea trans men existed at that time. My own loathing of womanhood was A Problem. But that’s besides the point. The point is, if you had a uterus, you were a woman. And if you were a woman, you do not really own your own uterus.

Obviously, they didn’t feel this way about any other organ. No one was expected to go through mandatory liver donation in order to save lives. Donating your organs after you die was considered a personal choice – because you own your own organs, even when you’re dead. Even if you don’t need them. Even if it would save a life. Even if you would probably be fine afterwards, or wouldn’t miss it at all (because, you know, dead). The obvious double standard went by completely unnoticed. 

I can remember saying trite little things, nice pat answers to the protests of why abortion should be legal. “A fetus is a person” I would say. In the case of assault, “don’t punish the baby for what its father did.”  Yeah, it was awful. I saw awful things, and I regret them. I was also seriously brainwashed by the environment in which I was raised. I am so very glad I escaped.

And yet, here we are. The people who think that way are in the minority in my country (the US, if that wasn’t clear), but it’s starting to look like that might not matter. And that TERRIFIES me. 

People having autonomy over their own bodies is so incredibly vital. Ok, this one point is about abortion, but the greater landscape it sits on covers so much more. It used to be illegal to be gay; for two people of the same gender to have sex. But because we should get to decide what we do with our bodies, people pushed for that to change. 

And yes, it also touches on autism, because we are STILL fighting for autistic people to have the right to own our own bodies. Things like “quiet hands” and training children to not rock or stim in general. Training children to tolerate being touched by anyone who wants to touch them. Training children to be compliant, to be obedient, that what other people want is more important than their needs or their safety or their own claim over their body. 

I was lucky (if you could call it that) in that I was given that training implicitly. I did not have to go through ABA or the other therapies that are explicitly about training autistic children to hide their needs and their pain and to assimilate into a culture that does not care about them at all. Even so, I entirely internalized that what other people want from me and my body is more important than what I want or need, and that I do not truly have ownership over my own body. 

It led me to be in some bad situations.

It led to me getting hurt.

And I still struggle with it. I will quietly endure pain and sensory overload because I know other people are just enjoying the music being that loud, or the lights being that bright. I KNOW, deep down inside where my logic can’t touch, that what they happen to like is more important than my pain or my ability to also be in that space. 

On a side note, I also have Thoughts about this idea that it only means it will become up to the states to decide. I find it sad just how much the rallying cry of “states rights!” has become a red flag for me. I mean, I may be very far left, but I am still an American. I like decentralized government. I like leaving matters up to the states if they can be. But human rights IS NOT a matter that can be left to the states. And somehow, the cry of “states rights!” always seems to pop up when we’re looking at denying a group of people some right or another. Somehow, those are people who only seem to care about states getting to choose their own laws on a matter when they are hoping the states will choose oppression. 

I don’t have a uterus anymore, and I am VERY glad for it. Back when I did have a uterus, I had a whole series of things I would do if I somehow ended up pregnant – the first option was abortion, and the last option was s*icide. THAT’S how serious it was to me. And it’s not just me – it’s that serious to a whole lot of other people. 

So yeah. This is horrifying to me, on many MANY different levels. 

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Self Care – what is it, anyway?

Image by Gerd Altmann from Pixabay

Ok, fairly regularly I’ll see things about self care. Specifically, the importance of self care and various examples of self care. These are great! I love self care and I love seeing people promote self care.

But sometimes I then see arguments about self care. Different people have different needs, and so self care often looks different for different people. Pretty straightforward, right? Well, sometimes Group A will declare that THEIR needs are more real and important than the needs of Group B, and so the self care of Group B does not actually “count” as self care. For example, taking meds vs. taking a bath, or keeping doctor’s appointments vs. drinking a hot cocoa.

I’ll be honest – that irritates me. Kind of a lot. The reality is it’s ALL self care. ALL OF IT. Self care is simply identifying your needs, and then fulfilling them yourself. No more, no less.

Let me use myself as an example. I deal with pretty severe depression and anxiety. So my self care involves taking my meds every day and keeping my appointments with my therapist, as well as working hard in said therapy. 

Something is wrong with my sense of thirst, so it’s way too easy for me to get dehydrated. Like, to the point that it’s landed me in the hospital in the past. So my self care is also working hard to remember to drink water. Since I can’t trust my body to tell me how much water I need I simply make a point to drink 64 ounces of water a day. By extension, my self care also means not listening to the people who try to tell me that the 64 ounces thing is a myth and I’ll totally be fine if I just drink when I’m thirsty. I won’t be ok if I do that, I haven’t been ok doing that, I am taking care of myself in the way that I need to. 

I have been experiencing pain for several days now due to a muscle in my thigh being about as tight as an iron rod. This means that self care might be (if I actually manage to do it) taking a hot bath or maybe going and getting a massage. Oh, and it’s legitimately way easier for me to take my meds every day than it is for me to go draw and take a hot bath. Why? One is in my routine, and one isn’t. 

Self care can mean that I carefully limit my exposure to stressful news – being as informed as I can handle, but taking breaks when I need to. It can mean having a hot cocoa and doing breathing exercises when my stress levels get too high, or maybe when I get too irritated at people telling me that I don’t need to worry about my water intake (seriously, this drives me bonkers). 

Ultimately, just to really hammer in the point here, self care is taking care of myself. It involves a wide variety of things in order to address my various needs. I am a human being, just as complex and contradictory as any other human being, so my needs reflect that complexity. 

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Do I “Deserve” To Exist?

Have you ever noticed that it seems we need to justify our existence?

And by “we” I mean everyone. Literally everyone. It’s just that some people seem to have a head start and find it easier to make that justification than others. 

Ok, I think it’s easiest to explain what I’m talking about by starting with minority representation in fiction. The “default character” is a white, straight, cis, fully abled, gainfully employed man. The more a character deviates from that starting line, the more people will demand that the deviation be explained and justified. Sometimes this is extreme – there won’t even be a woman or a character of color unless the plot demands it. But even when it isn’t so extreme, it’s always there to some degree. Disabled characters are incredibly rare in fiction, and even MORE rare when the story doesn’t demand it. The more a character deviates from the default, the more people find it outlandish. “What’s next, a deaf lesbian Lebanese character?” I have even seen people say that they are ok with diversity in fiction, but not “forced” diversity. Ok, how do they define “forced diversity”? Apparently that is any diversity in the story that isn’t justified by the plot. 

I’m not even kidding.

So of course, then you have people saying that hey, maybe you don’t need to justify the existence of varying types of characters. Deaf lesbian Lebanese women EXIST. Disabled people EXIST. People just ARE, no compelling plot reason required.

Buuuut… I want to take this a step or two further. See, the attitudes people have about diversity in fiction extend to their attitudes towards people in real life. Not only in terms of the various forms of bigotry (I mean, totally that too, there’s just more) but in terms of people needing to justify their existence. Just in general. All the time. 

The example that first got me thinking about writing this blog post was how “contributing to society” is considered synonymous with having a job that earns money. Do you have a job that makes money? Well no matter what it is you’re doing, you are contributing to society. Do you not earn money? Then you are NOT contributing to society, no matter what else you are doing. It’s an incredibly toxic concept, but it’s absolutely pervasive. 

It shows up in other places too, though. Like the concept of having to earn our basic survival needs. People will say that we must EARN our access to healthcare, earn the food we eat, earn the roof over our heads, earn the clothes we wear. These are all things that we need to survive. When people say that we must earn those things, what they are really saying – the idea that is behind their words – is that we must earn the right to exist. That we must justify our existence in this world by being “worthy” of existing.

As I’m pretty sure is obvious by now, I disagree. I REALLY disagree. I firmly believe that everyone should have access to the basic necessities of living. I believe that this is what society is for. I’m not looking to go into detail in this post, so I’ll just mention that there is increasing amounts of evidence that this attitude is also extremely economically practical. In the end, when the poorest among us does better, we ALL do better.

You can stop reading here if you want. I mean… ok, you can stop reading any time you want, obviously you don’t need my permission. What I mean is we got past the bit that’s about me being opinionated and now is the bit where I get more personal. 

See, I really, truly believe all those things I said above. I apply those beliefs to everyone…….

Except myself.

Apparently I have internalized the whole concept of needing to justify existence enough that I really feel like I need to justify MY existence.

And I feel like I’m not managing it. 

I can’t justify or defend the space I take up in society, in my friend circles, hell sometimes even within my own home. I know, intellectually, that I shouldn’t HAVE to justify or defend my existence. While plenty of random strangers have acted like my existence isn’t worthwhile, those closest to me don’t act like that at all. In fact, they seem to like that I exist. 

And yet, it somehow doesn’t sink in. I don’t work. I don’t have a job. I’ve done other things, like transcribing for the National Archives or house/pet sitting for people or heck, even this blog, but I don’t earn money. 

And even though I don’t think this about literally anyone else, somewhere deep inside I think this makes me a burden. On everyone. 

The thing that’s saddest of all is that I am far from the only person who thinks this way about themself. We’re taught that we need to earn our right to exist. Even if it shouldn’t be that way, even if we don’t actually believe it, somewhere deep inside so many of us still think that about ourselves. 

Something needs to change.

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Social vs Medical Model of Disability

My favorite lens to look at disability through is the social/medical model of disability. I have recently been reminded that these models aren’t as universally known as I imagine them to be (I mean, I’VE known for years, so surely everyone else knows too, right? Yeah, that’s not how it works) so I just want to talk about it.

So, what does “social model of disability” and “medical model of disability” mean, anyway? In simple terms, the medical model of disability is the idea that disability is something wrong with the disabled person, and the correct solution is medical interventions to fix them. The social model of disability is the idea that disability is something wrong with society, and the correct solution is ensuring accessibility for everyone.

I have met/encountered people who fell hard on both sides of that divide. Personally, I used to be pretty firmly in the social model camp but now I think they both have their uses and their truths. 

Disability is a BROAD category. There are many ways and many reasons to be disabled, and so it seems to just make sense that there need to be a variety of solutions and responses to disability. Sometimes that will look like accessibility – ramps, mobility devices, communication devices, heck even just simple awareness that disabled people exist and are ok. 

Other times it will look like medical interventions. It can look like trying to fix what’s wrong. I firmly believe that it’s ok to be disabled. That disability doesn’t make you have less worth as a person, that the role of society is to take care of each other, INCLUDING those with disabilities. 

I also firmly believe that if you have a disability/are disabled in some way, it is ok to want to be better. It’s ok to seek out treatments and it’s ok to want a cure. 

I firmly believe that both of these concepts can coincide. That they do not have to contradict each other and it’s up to each individual to navigate what the right answer is for THEM. 

For me, specifically in terms of autism, I don’t want a cure. I have spoken about this a lot. I want accessibility, I want support, I want a world that accepts me the way that I am instead of demanding that I be someone else. Since my difference is fundamentally about how my brain works, “curing” me would mean turning me into someone else. The “me” who is writing this would no longer exist, and in essence be dead. Instead there would be some other person. I’m not interested in that.

But despite the accusations people have levelled my way, I am still in favor of treatment and help. I mean, not ALL treatment (Just Say No to ABA), but I do need help. 

I ran into a reddit post a while back that I think really highlighted this whole issue. A person with dwarfism talked about a limb-lengthening surgery that can be used to “fix” dwarfism, except that while it does lengthen one’s limbs it’s a very intense surgery that often comes with any number of negative side effects. Apparently in Italy, limb-lengthening is simply considered standard treatment for people with dwarfism, with no real thought given to the idea that maybe it isn’t the best solution for everyone. 

I want to highlight one particular part they ended their post with:

“What I did need was my legs straightened, and spinal decompression surgery – to mitigate pain and reduce numbness in my legs. Limb lengthening to me just seems like a barbaric, extreme measure to act as a band-aid for a society that refuses to be accessible or accepting.”

Here they advocate for both medical interventions AND social supports. For finding the balance between the two. 

Another aspect of this is because I believe we need both, and because I believe that society exists for people to support each other, social supports need to be socially implemented. It’s on all of us, not just disabled people, to ensure accessibility. This gets into a post I wrote ages ago about my own exploration of the concept of disability rights being civil rights, specifically centered around the idea of businesses with signs saying “disabled entrance in rear.” Or rather, about how upsetting all of that was. Basically, every single time I tried to talk to people about it, they were far more interested in EXPLAINING to me about how it just isn’t that SIMPLE and I need to UNDERSTAND and my question wasn’t fair and and and and and somehow my attempt to say “hey, maybe the concept of most people getting the main entrance but disabled people only able to enter from the rear isn’t great” was just never heard. Like, people weren’t even listening to me enough to disagree with me – they just weren’t listening AT ALL. It was a bad time.

I wonder if things have changed enough since then for the conversation to be possible. I’m honestly a little afraid to check. Last time was just so unpleasant. Still, maybe I’ll try at some point. I wonder if fb still does polls. Or maybe use google forms? Hrm. ANYWAY. 

This post has wandered around a fair amount. This is honestly mostly an exploration of my thoughts on the matter, plus just yet another person shouting about these disability models into the void in the hopes that just a few more people will hear. 

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What is society for?

Humans, nearly universally, live in societies. We get together and live cooperatively and interdependently. Humans are profoundly social animals; it’s our primary survival strategy. There are a number of benefits this confers such as skill specialization, resource sharing, and cooperative breeding, but I really want to focus on the disabled aspect of this. What is society for in terms of disabled people?

I think that people have two wildly differing ideas regarding what society is for, and that is where a lot of conflict comes in around how to care for disabled people (or, and this is terrible even to say, whether to care for disabled people at all). Personally, I call these ideas the goose model and the wolf model.

So ages and ages ago, I lived on a sheep farm for around a year. That sheep farm happened to have a flock of geese that lived there too. Those geese had pretty easy lives. Food and water was plentiful, shelter was close at hand, and the dogs made sure that they didn’t really have to contend with predators. Nonetheless, geese will always be geese. Geese are also social animals, preferring to hang out together in a flock (with the exception of breeding season, but anyway). However, they do not in any way take care of each other while they are in this flock. I got to witness one goose get sick (not terribly sick. Like a goose cold or something) and the rest of the flock turned out that goose absolutely viciously. They drove it out, wouldn’t let it get close, and closed ranks against it. That poor goose tried incredibly hard to be as close to the flock as they would let it get, and otherwise just tried to spend it’s time hiding since it was alone and didn’t have the safety of its flock.

To the geese, the group is about protection from predators and a hostile world. Even if the world they live in isn’t actually hostile, that’s still what the group is for. A weak member of the group drags everyone down, and thus is undesirable. This is what I call the “goose model.” This idea of society is fear-based, constantly worried about attack from outside threats, and considers it best to get rid of anything that might be seen as “weakness.” 

(Disclaimer: I don’t know if all geese act like that or just the breed that I was around, which I believe was a particularly vicious kind of goose. Regardless, it’s still where I got my metaphor for this part of my model)

Then there’s the wolf model. Wolves also live in groups, but their treatment of the sick or injured or weak is wildly different from what I saw in those geese. Wolves actually care for their weaker pack members. The weak, the injured, the sick, the elderly, the disabled – the rest of the pack takes care of them. I’ve seen this behavior in cats as well. Cats are not as aggressively social as wolves or humans are, but they still can form bonds with each other and I’m sure we’ve all seen stories about a cat taking care of an injured friend or refusing to leave an injured cat’s side. 

In this model, a society is for taking care of each other. The strength of the group comes from the assurance that the members will always take care of each other. There is no need to judge anyone’s individual contribution – we’re a family, and family takes care of family. 

It probably goes without saying that I am in the wolf model camp. Humans are cooperative and interdependent, and I strongly believe that our strength comes from taking care of each other. It’s about the entire group lifting each other up, and everyone being better off because of it. It’s about recognizing that everyone deserves to live and thrive regardless of what they may struggle with.

As far as I can tell, human societies have been all over the board in regards to how they treated the sick or disabled. Since I’m not actually trying to write a term paper here, I chose to not dive into that mire. I did, however, find some interesting articles about prehistoric societies. Apparently there is a growing body of evidence that prehistoric societies also took care of their sick, injured, etc. Here is an article going over a few cases of archaeological finds showing disabled individuals thousands of years ago, living far longer than they would have been able to on their own. They absolutely had to have been taken care of – meaning the people around them did exactly that. It seems that at least some ancient humans viewed the role of society as being for taking care of each other. 

Personally, I think that’s pretty cool.

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Income does not equal Worth

dollar sign image, creative commons, from Rareclass

I want to talk a little bit about a thing that I really, truly struggle with. I live in the US, which is an extremely capitalistic society. Here in the US, your value is strongly equated to your income, in some sectors to the point that your income determines your morality (rich people are good regardless of what they do; poor people are bad regardless of what they do). Disability is often seen as a moral failing, and being too disabled to work is seen as either shameful or lazy.

I have been very open on my blog about the fact that I do not have a job or do work for an income, as well as the fact that any time I try to do so I end up profoundly Not Ok. What I am less open about is the fact that I feel incredibly deep shame around that fact. Nor has everyone around me been understanding of my difficulties in work. I’ve had second wave feminists tell me (back when I was presenting as a woman) that I should get a job Because Feminism with clearly no understanding of why I wasn’t working. I once had a therapist spend months trying to push me to get a job until she saw me being Not Ok and changed her mind.

Now, intellectually I don’t at all think that income means worth. I believe that everyone has worth, just by existing. I believe that everyone deserves food to eat, access to healthcare, and a reliable place to sleep and bathe regardless of who they are or how much money they have access to. I believe the role of society is to support everyone. I believe that there are many ways to contribute to society that don’t necessarily involve generating an income. In fact, given that “generating an income” relies on producing something that other people are willing to pay for, I’d say that there are MANY ways to help and contribute to society that don’t involve getting paid.

Yet despite these beliefs of mine, I have strongly internalized the idea that worth comes from generating income, which means that since I don’t generate income I must not have worth. I am constantly bombarded by the message that I need to work for money to have value as a human being – both from society at large and from people I am or have been close to (not everyone I’ve been close to, but definitely some of them). I frequently wonder what kind of income work I could do that wouldn’t leave me Not Ok. Something like working all by myself in some dusty basement doing archival work or something (ok, that one is less a practical idea and more a fantasy. ANYWAY). 

I wish I had strong words of wisdom I could put out there for other people who feel like I do, but I don’t. All I have is 1) the firm belief that we all deserve to live, and thus deserve the things needed to live, regardless of our ability to produce an income, and 2) an internalized belief that because I do not generate an income I have less value than the people around me. It’s rough.

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Can we please have a conversation on this?

Ok, this is getting written just minutes before I am posting it, so this will probably be pretty rough. Let’s see how this goes.

I follow a woman named Caitlyn Doughty on youtube and on her blog. She is a mortician who talks about death, and grief, and burial practices, etc. She wants people to become more connected to death and grief and such, and is generally not in favor of how our current society generally tries to avoid such things. This is a really rough explanation, but I hope I’m getting the idea across. I really like her youtube series Ask A Mortician and generally support her ideals.

Now, there’s one thing in particular I want to focus on here. On her blog, she is talking about an “End of Life Option Act” currently in debate in California. She is strongly in favor of it, believing that people who are terminally ill should have the option to request medication to peacefully end their lives. Honestly, I can see her point. I would even go so far as to say I support the idea.

Only there’s another side to this. A disability side. A side where doctors (and others) will take it upon themselves to decide whether or not a severely disabled person’s life is worth living. This is a very dangerous and Not OK thing (and there are links out there about it; I’m sorry I don’t have any on hand right now). So in disability communities, often people are absolutely against Death With Dignity legislation, because of how it could easily be abused.

What I think needs to happen is for these two groups to have a conversation. Those who are in favor of things like the End of Life Option Act need to sit down and listen to the concerns of disabled individuals and find ways to address them. The concerns of the disability community are serious and entirely valid, and deserve to be heard.

Which is why, way back in February, I decided to give it a try. I went ahead and emailed Caitlyn via the email address given for Ask A Mortician on her website. This is what I emailed:

Hello. I am a big fan of your work, your book, your youtube channel, and your message of death positivity in general.
You recently posted a link to your facebook page talking about a landmark decision in Canada to allow two women to “die with dignity.” I support such legislation and am a big believer in people being able to take charge of their own deaths.
However, I also run in some circles that are strongly against such legislation. As such, I have a serious question for you. I know you cannot answer individual mail anymore, but I hope it is at least something you are keeping in mind as you do your work.
I am autistic, and am at least somewhat aware of disability issues. One of those issues is the extremely serious problem of doctors believing that disabled lives are not worth living, and doing things like pushing disabled people to not undergo life-saving treatment, or deliberately giving needed treatment so slowly that it does not do any good. One of the responses to this problem is to be against “death with dignity” legislation, under the idea that there is absolutely no way to enact this without leaving it open for abuse by doctors and caregivers of the severely disabled.
I like to believe that there is a way to cover both of these issues. So what I want to know is – as a proponent of death with dignity and such, how are you taking into account the other side of the coin, with the current and horrific problem of people in positions of power already concluding that disabled lives are not worth living, despite the fact that many of those disabled people feel very much so that their lives ARE worth living? What do you think is the best way to prevent abuse of “death with dignity” laws or rulings in the future?
Thank you
Andraya
Now, I knew getting a reply was unlikely. I’m sure she’s very busy with her projects and what’s going on in her life. However, I still found myself hoping that she would see this as a significant enough issue to address. That there would be some acknowledgement from her on how important it is to never decide for someone else whether or not their life is worth living. But, I suppose unsurprisingly, there has been nothing at all. And now she’s seeking support for this End of Life Option Act in California, and all I feel is sadness that the death with dignity people won’t bother to have a conversation with us.
As it is, I don’t think I can fully support death with dignity anymore. At least not until we can have this conversation that we really need to have, addressing the very real concerns regarding possible abuse by doctors. Being heard is important, and it hurts when it seems the concerns of disability activists are seen as irrelevant.
UPDATE: Not long after putting this post up, Order of the Good Death contacted me by email! It was mostly informational, adding some details that weren’t in the blog post about safeguards and such that exist to hopefully prevent abuse. Apparently that is also why they want to send it through the legislature rather than have it go by a ballot – those safeguards would probably be dropped if it went to a ballot measure. So these are the points that Order of the Good Death made regarding safeguards:
  • It allows only qualified, terminally ill and mentally competent adults to request and obtain a prescription from their physician for medication that the patient can self-administer to bring about a peaceful and humane death.  Two physicians must confirm the prognosis is terminal.
  • It requires two witnesses to attest that the request is voluntary.
  • It protects physicians from civil or criminal liability, and from professional disciplinary action, if they fulfill an eligible  individual’s request. Participation by doctors is fully voluntary.
  • It provides safeguards against any coercion of patients: It establishes felony penalties for coercing or forging a request; and it honors a patient’s right to rescind the request.

That the medication is to be self-administered is, I think, the point that I find the most important. I do not believe even these measures completely prevent possible abuse, but it does drastically reduce it.

Plus, I am both surprised and pleased that I was contacted at all. That’s pretty cool.

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I am so sick of this

Image is of a woman prying herself out of a wheelchair in order to reach top-shelf alcohol. Text reads: “Alcohol / Makes miracles happen”

I am really struggling to find my words on this one, but I am going to try. This meme. This HORRIBLE meme. It’s hardly new, but it just keeps popping back up, again and again. I am inclined to think that there are *many* layers of awful in this, but let’s start with the obvious one. That people assume she’s faking.

*sigh*

The fact of the matter is, there are people out there who still have some use of their legs, but still need wheelchairs. It’s a thing. Yet so many people out there are either unaware of this, or just refuse to believe it.

This is an example of people policing disabled people. We have to be disabled “enough” in order to “count.” Apparently the only options are able-bodied, or para- or quadriplegic. This erases the existence of people who have partial paralysis, or MS, or degenerative diseases, or any number of other things that will severely limit a person’s mobility but still leave limited use of limbs. There are many people out there who outright need wheelchairs, but can stand for short periods of time.

Yet when looking at this picture, it seems that people just see a “faker” because, of course, that is the only option for a person standing from a wheelchair. (tone note: that was intended as sarcasm)

Only when I look at this picture, I do not see a person who is standing easily. I see a person who is standing awkwardly. Who is holding themself up with the assistance of a shelf. They do not look like they are faking it to me, so why do we have to go there?

And then, of course, there is the alcohol part. I strongly suspect that people see this, and even if they recognize that the person can probably only stand with difficulty and for short periods of time, there is judgement that the person is standing for alcohol. As though alcohol is a luxury that only able-bodied people get to have. That disabled people should stick with what we can reach. Or possible, that disabled people are supposed to be helpless. How dare someone work to get what they want, and how dare that work go towards alcohol? (more sarcasm)

And really, there are SO MANY ways that able-bodied people police disability. The comments people make when they see someone walking from their car in a disabled spot is one of them. I mean, I’m sure they think they are standing up for disability, by calling them out when able-bodied people use those spots. And yeah, there are assholes who use those spots inappropriately. However, that random person out there who yells at the person who parked there *cannot tell* if the person is disabled or not.

I’m serious. No one can. We can’t tell if the person has some form of condition that allows them to walk, but only for very short distances. We can’t tell if they have an artificial limb under their pants. We can’t tell if they have rheumatoid arthritis or fibromyalgia or any other painful condition that makes walking agony. Yet when people yell at a person who perhaps looks fine on the surface, they are assuming they can tell. They are saying that only the visibly disabled get to have accommodations, and those who have invisible disabilities can stuff it.

And they are saying that the only ok way to be disabled is to be entirely helpless.

We need to stop it.

Right the fuck now.

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Filed under rant, that's not helping

I am not a feminist

Mad intersection

It’s true. I do not call myself a feminist, I do not want anyone else to call me a feminist, and I can no longer justify considering myself a feminist.

What I want to do here is explain why.

Though first, i want to explain why not. I mean, usually when I see people claim they are not feminists (usually on the internet) they are setting up blatant, horrible straw man arguments and making utterly absurd claims about feminism in order to tear it down. Usually the people in question are really quite misogynistic or are women who are internalized a lot of sexism, and it is not at all uncommon for those folks to want to make things go back to how they were in the past when women were always expected to be subservient to men.

I am not one of those people. Not at all. When I encounter those people I generally immediately want to leap to the defense of feminism, as I believe those critiques are entirely unreasonable.

No, the reason I am finally rejecting feminism is because feminism has failed, and is continuing to fail, in regards to intersectionality. It is a very serious problem within feminism, and it is one that I can personally no longer deal with.

I’m going to start with an example that I think people might have an easier time swallowing than my own issue, just because of the way the world is right now. Ages ago, Michelle Obama, the FLOTUS, said “at the end of the day, my most important title is still mom-in-chief”

And boy was there a kerfuffle over that one! Many feminists (white, straight, able-bodied feminists) thought that she was totally betraying feminism and being a bad example of a powerful woman and whatnot. Now, there is a very good write-up of all the problems of that over here that says it all much better than I ever could. I highly suggest you read it yourself, but if you don’t want to here’s a brief excerpt:

Racism, slavery, white supremacy, economic inequality and deprivation forced black women to cater to the needs and demands of Miss Ann and her family. For centuries, we black women ran ourselves weary and exhausted making sure white men, white women and white children are fed, bathed, clothes and content before we could even have a moment to feed, clothe, bathe and care for ourselves and our own families.

To add to this, I just recently read the book Incidents in the Life of a Slave Girl, which is a rare, first-hand account of slavery written by a woman. Of note – even after she escapes, even after she got her children out, even when she was living in New York – ostensibly a free state, even when she found friends who would help her, she still had to get work caring for a white baby while being unable to even live with her own children.

The point here is that the history and oppression of black women is fundamentally different from the history and oppression of white women. Feminism that only recognizes the oppression of white women and expects ALL women to conform to that perspective is totally failing to take into account the different needs of black women. For white women, choosing to leave the home and work was the defiant choice, proving their independence. For black women, who were often forced to leave their children to take care of white demands, it’s the opposite.

Thing is, race is far from the only area where feminism has been blind to intersections. Sexuality is another obvious one. However, the ones that strongly impact me personally and have made it impossible for me to continue to call myself a feminist are the intersections of being female while also being autistic, mentally ill, and disabled. A feminism that ignores the impact of these things is a feminism that has no idea of my needs or the kinds of choices I need to make. This is a feminism that does not even acknowledge my existence.

And while feminism is starting, barely, to notice that there is work to do in regards to the intersections of womanhood, race, and sexuality, they still do not notice or acknowledge the myriad other intersections that exist and matter and make an impact on individuals.

As it is I certainly support much of feminism. I believe in equality for all sexes and genders, I believe that gender is still a major issue in the US, and I believe we still have a lot of work to do. But I am not a feminist, because I cannot be part of a group that is blind to who I am, the choices I make, and how my empowerment will look different from their empowerment.

Instead, I have taken to calling myself an intersectionalist.

I’m sure it will be a thing eventually.

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My Biases

Recent events have gotten me thinking about some of my biases. I do have them. Some of them are really quite strong. I am not here to apologize for them – quite the opposite, I like the biases I am about to talk about. My writing tends to be heavily influenced by them. However, it is clear that there are people out there who think these types of predispositions are absolutely horrible, so I figured I would just make what I believe utterly clear. This is my perspective.

1. I am heavily (though not completely) into the social model of disability. I do not say this to simply disregard the medical model, but to say that the medical model is, by itself, woefully incomplete. The social model is absolutely vital.

Basically, this means that I think that the problem is not so much the physical or mental differences (which is not to say we don’t have challenges. we do. See my contradictions post), but the way society treats those of us who have physical or mental differences.

I do not say that it is we who are broken and have to be fixed or cured. I say the world needs to learn to accept us, embrace us, and accommodate our needs. This is a very huge deal, especially as it seems that some people who strongly prefer the medical model of disability can be quite vitriolic about it.

Further reading:
http://en.wikipedia.org/wiki/Social_model_of_disability
http://www.scope.org.uk/about-us/our-brand/social-model-of-disability

2. Disabled adults need to lead the conversation about disability – not the parents of disabled children. This… this is a contentious point. Just to be clear, I am not saying that there is no room for parents at the table. Quite the contrary, parent’s voices are important too. However, non-disabled parents need to take a few steps back to make sure the voices of disabled adults are heard first, and need to be willing to listen to and take seriously the messages coming from disabled adults.

If parents of disabled children decide that the adults within their particular disability niche should not be listened to, I will be incensed. Would they want their own children to be ignored that way, when their children become adults? Somehow I doubt it.

If said parents disregard the social model of disability and are firmly within the medical model of disability and refuse anything else, my reaction of displeasure will only increase.

3. This one is more recent and less entrenched than the other two, but more and more I’d like to see the various diverse disability movements come together. I would like to see autistic adults do more talking to adults with other disabilities. I would like us to talk about how our issues overlap, and how we all might be able to help each other. Because there IS overlap, and surely we could come together to combat the problems. So often our communities seem so insular. Maybe there’s a way to change that.

This post needs a conclusion or wrap up. To be honest, I can’t particularly think of one. I suspect I have more biases, but these are the big ones. These are my beliefs, and I care about them, and knowing what they are probably helps shed light on where I’m coming from.

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